Mr. Cohen has had a few quiet days. He is mostly getting left alone. He was supposed to get an eye exam yesterday but they have put it off for a little while to just let him rest. After 4 pokes, he got an IV in so that he can get a blood transfusion again today. Cohen has also officially been labeled a "chronic lung disease" baby. We had heard this before in the past but they decided that he will now be treated as a baby who has chronic lung disease. Because he was born so young, his lungs didn't have a chance to fully develop and so the ventilator that he is on with the oxygen causes some damage to his lung tissue. In time, he may outgrow it but may have some long term lung issues like asthma. The Dr told us that Cohen will probably have to go home on oxygen and possibly he will continue long term on the diuretics which help to keep the fluid out of his lungs. He will also have another echo on Monday to look at his PDA and to see where they are going to go with that.
Please pray for us as we work to figure out all our insurance issues as I am not currently working and lose my insurance at the end of this month. We are hoping to be able to get Cohen and I on Danny's insurance as soon as we can. We aren't sure if they will put us on for August or if we will have to wait until open enrollment. Cohen also qualifies for state insurance because he is a micropreemie so we are also trying to work that out, its kind of an additional insurance on top of regular insurance. It's basically a mess, so hopefully we can figure it all out fairly quickly. Also, Cohen had a high temperature last night but hopefully it was an isolated event. His nurse doesn't seem to think he is sick because he isn't acting like he is, so please continue to pray that he doesn't get any more infections. He is so susceptible to everything and has no immune system and can get infections really easily.
Wow! 31 weeks. I just still can't believe the boys were born so early. So sad that Carter isn't in your arms having his kangaroo time too :( Thank you for all the updates. The picture of Cohen in his hat (we Canadians say 'toque') with Peter Rabbit was just too precious. I'll be praying for all the insurance unknowns. That's a stress you just don't need.
ReplyDeleteI can tell he's growing! I hope you are able to get on state insurance - that will cover all the extras. When our Addisen was 10 1/2 months she had a major surgery at Children's and she was on state insurance, it was a huge blessing. Continuing to pray for your family!
ReplyDeleteYou don't know me, but my girlfriend told me about your blog and I have been following it ever since your beautiful boys were born. I too had twin boys that had twin-to-twin transfer. My story is a little different, they didn't figure it out until my 25th week. The boys were born at 26. They weighed 2 lbs(Crew) and 1.7 lbs(Hudson). So close to Cohen and Carter. Both of the boys struggled ALOT with their breathing. The two were also diagnosed as chronic lung diease babies. They remained on the ventilator for over six weeks. I was always so frustrated when smaller, younger babies would move on to c-pap and there we sat...still working to get off the ventilator. Both boys had PDA. Which I'm happy to say cleared up FINALLY after the steriods and time. I pray that Cohens will too. The doctors told us the same things, which all the potentials scared me. I here to say, be patient. In God's perfect timing. Although the boys struggled, they both came home after 3 long months in the NICU without needing any oxygen!! They are now 3 1/2 years old and PERFECTLY healthy. Praise GOD!!
ReplyDeleteI am so sorry for your loss and can't imagine trying to go through this journey when you mourn for Carter. But just know that you have SO many people thinking and praying for you and your family. Even people you've never meet.
God bless,
Amy(lunde)Maynard
Hi Danny and Jana. We want you to know that we are continuing to remember you in prayer. We are thankful for the encouraging progress Cohen is making. We are also thankful for your faithful recording of your thoughts and for your openness. Sorry you have insurance issues to deal with and will pray that they are quickly resolved. Sorry too for the pain you feel for Carter's homegoing. You have wonderful insights about God's faithfulness despite the storms. We're proud of you.
ReplyDeleteLove you, Delaine and Emily